Even our wise celiac disease community can fall prey to fiction that circulates in the media or misconceptions from confusing terminology. It’s time to dispel some of the top myths.

Celiac disease is on the rise because today’s wheat is different than it used to be.

Modern wheat breeding is often blamed for the increasing prevalence of celiac disease, but according to Donald Kasarda, PhD, that theory falls flat. In 2013, he published a study in collaboration with the U.S. Department of Agriculture that looked at the gluten content of wheat over the past century. Kasarda’s findings showed no notable rise in the gluten ratios of today’s wheat.

However, he still believes other factors, such as the upsurge in wheat consumption and the expanding use of “vital wheat gluten” as a food additive, are potential causes to explore.

Gluten-free food should contain zero gluten.

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This might seem a simple expectation, but in reality it’s a nearly impossible feat - and one that could severely limit our gluten-free food supply. The most reliable gluten detection tests in use can consistently detect as low as 5 parts per million (ppm). Even if we are able to test for zero gluten in the future, that level would be too restrictive for most manufacturers to achieve, and would potentially result in even higher price tags.

Moreover, researchers agree that most people with celiac disease can safely tolerate up to 20 ppm of gluten, a level which the vast majority of third-party tested gluten-free products are falling well beneath, according to dietitian Tricia Thompson of Gluten-Free Watchdog.

If it says “manufactured in a facility that also processes wheat,” it’s not safe.

This “facility” warning is an example of what the U.S. Food and Drug Administration (FDA) calls a voluntary “allergen advisory” statement. It’s different from a “contains wheat” statement, which is required by law if wheat is used as an ingredient and not stated in plain language in the ingredient list. The voluntary warning means that the product is not made with wheat ingredients, but there may be risk of cross-contact with other wheat-containing products during manufacturing.

However, it is possible for a manufacturer to produce safe gluten-free food for people with celiac disease using common equipment or a shared facility – as long as the right protocols are in place to provide strong oversight, including proper ingredient sourcing, cleaning, storage, production and testing.

Fortunately, advisory statements will soon become less ambiguous. As of August 2014, the FDA began to enforce a gluten-free labeling rule that prohibits foods containing 20 ppm of gluten or more from bearing a gluten-free label claim.

Both celiac disease and gluten sensitivity can be diagnosed with a blood test.

While a celiac disease diagnosis begins with an IgA-tTG blood test, gluten sensitivity is a diagnosis of exclusion. Different blood, saliva and stool tests are being marketed as gluten sensitivity tests, but they have not been scientifically validated. These types of tests oversimplify diagnosis.

Currently, the only way to confirm gluten sensitivity is through a process of elimination – by testing negative for celiac disease and wheat allergy and then eliminating gluten under the supervision of a physician or dietitian skilled in celiac disease. If symptoms improve on the gluten-free diet, you likely have gluten sensitivity.

You should only use gluten-free shampoo and cosmetics.

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The choice is inevitably yours, but science indicates that gluten in personal-care products is not a threat to those with celiac disease. The exceptions are items that may be easily ingested, such as lipstick or hand lotion.

Researchers suggest that unless you have an open wound, gluten cannot be absorbed through the skin, so many topical items are acceptable for use. Just be sure to wash your hands well after application.

If a restaurant offers a gluten-free menu, they know how to serve me.

One day, we all hope to sit down to a gluten-free meal, no questions asked. Until then, don’t take gluten-free menus for granted. Some restaurants will introduce gluten-free options without the due diligence surrounding what is entailed to serve a “safe” meal to those on a medically necessary gluten-free diet.

The reverse can also be true: just because a restaurant lacks a gluten-free menu doesn’t mean they can’t serve you. Many restaurants will prepare fantastic and safe gluten-free meals upon request. The best defense is to call ahead and ask how a restaurant handles gluten-free food preparation.

The restaurant’s designated gluten-free menu includes 19 appetizer, entrée, and dessert options that either contain no gluten as prepared or can be modified to be gluten-free. These items are each $1 more expensive than their gluten-containing counterparts.

The lawsuit, which was filed on Dec. 9 in a Northern California court, notes that although some adjustments to regular menu items come at no extra charge, all meals on the gluten-free menu are more expensive, even those that naturally contain no gluten. Phillips contends that the extra surcharge reflects unequal treatment of those who are medically required to avoid gluten, such as those with celiac disease.

The Northern California woman filed the class action suit on behalf of anyone with celiac disease or gluten intolerance who ate from P.F. Chang’s gluten-free menu in the past four years – which, according to estimates, could include 3,000 people.

Phillips is seeking to remove the added menu costs, and receive restitution for surcharges that have already been paid as well as other compensation and penalties.

However, major celiac organizations the National Foundation for Celiac Awareness (NFCA) and the Celiac Disease Foundation have both voiced their concern over the implications of the lawsuit.

“While it can be frustrating to pay more for food that we need in order to be healthy, we can’t overlook the fact that making safe gluten-free food comes with a cost,” Alice Bast, NFCA’s president and CEO, told Allergic Living. “We would not want to deter other restaurants from purchasing gluten-free ingredients or pursuing training programs, [like those offered by NFCA], that can make them better equipped to serve gluten-free food to those with a medical need.”

A 2008 study comparing gluten-free items with comparable counterparts found that cutting out gluten can be costly. The Dalhousie Medical School researchers found that on average, gluten-free products were 242 percent more expensive. British researchers who did a similar study in 2011 found that gluten-free groceries range between 76 and 518 percent more expensive – a mark-up that some, like Phillips, argue is unfair.

“Having a dietary issue is a disability,” attorney Mark Heller told Yahoo Health. “To have to pay a premium price is discriminatory, and there is legal basis for a case. It would be like installing a handicapped ramp and then charging people a dollar to use it.”

When the NFCA posted news of Phillips’ lawsuit against P.F. Chang’s on Facebook, the article received more than 600 likes, however, majority of those who commented were concerned.

“My wife and son are gluten free because of celiac and we have no issues paying $1 or $2 more for gluten-free food from a trusted source,” wrote Matt Robbie. “P.F. Chang’s is our family’s favorite restaurant because of the precautions they take and the attention they give to making sure my wife and son are taken care of. I will pay extra for that every day.”

Other commenter noted that other allergy-aware restaurants, Red Robin for instance, also charge extra for items such as gluten-free buns. P.F. Chang’s, which was named as one of AllergyEats most allergy-friendly restaurants last year, says it does not comment on pending litigation.

As someone with celiac disease, Bast knows that eating gluten-free has increased her food expenses. However, she says, “Personally, I am happy to pay a few extra dollars if that means knowing I am safe from gluten exposure.”

]]>http://allergicliving.com/2015/02/18/p-f-changs-faces-lawsuit-over-gluten-free-menu/feed/0Why You Should Test For Celiac Before Going Gluten Freehttp://allergicliving.com/2015/01/15/dont-just-go-gluten-free-without-testing/
http://allergicliving.com/2015/01/15/dont-just-go-gluten-free-without-testing/#commentsThu, 15 Jan 2015 14:00:14 +0000http://allergicliving.com/?p=32121What seems like a harmless experiment could do more harm than good.

A few years ago, a gluten-free manufacturer approached me to partner on a major social media campaign. The theme: “Try a gluten-free diet for two weeks and see how you feel.” I said no.

While the promotion probably would have helped certain people identify symptoms that suggest a gluten issue, that’s not good enough. One of our key missions at the NFCA is to help people live full and healthy lives, and that means emphasizing a long-term view on how choices today may affect our bodies in the future.

Self-diagnosis is a rampant trend in the gluten-free sector, and it’s stoked by pop culture and marketing messages that encourage people to “just go gluten-free”. It sounds harmless enough, but is risky advice when it comes to potentially serious health conditions.

Here’s an all-too-familiar scenario: a person tries a gluten-free diet for a week or two and notices an improvement in health. The person then goes to the doctor suspecting that celiac disease or another gluten-related disorder may be the culprit, only to hear that he or she will have to go back on gluten in order to get tested. Frustrated, the person leaves the doctor’s office, never goes back on gluten and never gets tested.

I can’t fault someone for refusing to go back on gluten after experiencing how a gluten-free diet has restored my health no one wants to experience that pain and discomfort again. But that liberation doesn’t override the missed opportunity and critical step of visiting a doctor to get tested before trying a gluten-free diet.

If a person will ultimately end up on a gluten-free diet, what’s the harm in doing it right off the bat? To better understand the difference, it helps to step back and look at the bigger, long-term health implications.

When a doctor diagnoses celiac disease, that action dictates a number of next steps. Family members should be tested, and anyone with celiac disease should be checked for vitamin deficiencies and other autoimmune disorders. Self-diagnosis often leaves medical experts out of the conversation, and that means missing out on important tests, follow-up, preventive health care, identification of other conditions (such as anemia or thyroid disease) and potential diagnosis for relatives.

A medical diagnosis of celiac disease also plays an important societal role by helping physicians to gather more accurate facts and statistics about the autoimmune condition. In order to find alternative treatments and a possible cure for celiac disease, scientists need to know as much as they can about the celiac disease population. Self-diagnosis prevents researchers from capturing the whole picture.

Another risk in self-diagnosis is not having the proper support or guidance for maintaining a gluten-free diet. Eating gluten-free is not easy, and it’s tempting to cheat from time to time. Doctors and dietitians can provide the information, tactics and strength needed to stay gluten-free, and they can identify problems if you are accidentally ingesting gluten before serious or long-term health effects take hold.

On the flip side, if you do not have celiac disease, getting tested can help you make more informed decisions about your health. You can decide with your doctor whether to try a gluten elimination diet, alow-FODMAP diet, or you may establish that gluten isn’t the issue at all. The latter allows you to avoid the social and financial challenges regularly associated with the gluten-free lifestyle. Isn’t it better to know that now?

These are all important reasons why I don’t support self-guided gluten-free “challenges”, but the biggest factor is that these home experiments make our lifestyle sound so frivolous. Our celiac community struggles every day with myths and misguided assumptions about the gluten-free diet; we don’t need to give the general public more reasons to think lightly about our needs.

I know the medical community isn’t perfect, but I stand firm in my conviction that everyone should see a doctor and ask for a celiac disease test before trying a gluten-free diet.

It will always be easier to “just try” a gluten-free diet, but together we can teach others why testing is important, and how to do it: take the Celiac Disease Symptoms Checklist at www.DoIHaveCeliac.org and share your answers with your doctor. Ask for a celiac disease blood panel, and make sure it includes tTG and total IgA.

It’s not just a test; it’s a necessary step that can have a resonating impact on your health, your family, and the rest of your life.

The subject of oats and the gluten-free diet can be confusing. Here’s what you need to know.

Anyone with celiac disease quickly learns that the protein gluten is found in wheat, barley, rye – and a whole host of foods, not just cereal-based ones, but products such as malt vinegar, pre-made burgers (as a filler) and soya sauce. But one food that is getting a second chance on the gluten-free diet is Avena sativa - the common oat.

Oats do not inherently contain gluten protein, yet they are usually listed next to wheat, barley and rye as cereal grains to be avoided on the strict gluten-free diet. Why is this? The issue has been that oats in the field are commonly grown alongside or in rotation with the gluten-containing grains. It’s easy to get cross-contact during growing and harvesting, as well as through transportation on railway grain cars.

For these reasons, it’s accepted by experts that “regular” oats are likely to contain gluten and should be strictly avoided by those with celiac disease. But fortunately, “regular” oats are no longer the only oats available. In recent years, it has become possible to purchase uncontaminated oats. In other words, some manufacturers are now going the distance to ensure the oats remain “pure” and don’t get exposed to gluten.

There have been many scientific studies looking at these pure oats and celiac disease. Two recent studies – one focused on introducing oats to the diets of children with celiac disease and the other on long-term effects of oat consumption in adults with celiac disease – found no harmful effects related to moderate amounts of pure, uncontaminated oats in the gluten-free diet.

According to the Canadian Celiac Association, a majority of adults with the disease can safely consume half to three-quarters of a cup (50 to 70 grams) of “pure, uncontaminated” dry rolled oats per day. For children, it’s one-quarter of a cup (20 to 25 grams) a day.

In a statement released on November 14, 2014 the Minister of Health announced the government’s intent to allow oat products containing less than 20 parts per million of gluten to carry a “gluten free” label - an identification that was previously banned from all oat products in Canada.

“Canadians with celiac disease rely on accurate food labels that clearly state if a product contains gluten,” said MP Kelly Block, who announced the intent on behalf of the minister. “Allowing manufacturers to label their products as ‘gluten-free’ when they use these specially produced oats will make it easier for Canadians to identify products that they can safely eat and broaden the range of food choices that will provide a nutritional benefit.” There will be a comment period until January 27, 2015 so it’s not clear exactly when gluten-free oats products will be on shelves. (To comment or read more about the pending regulation, see the Health Canada website.)

When it comes to the safety of pure oats, there is one crucial caveat: a small subset of people with celiac disease will actually react to a protein found in oats, known as avenin, just as if they were reacting to gluten. According to the University of Chicago’s Celiac Disease Center, “perhaps less than 1 percent of celiac patients show a reaction to a large amount of oats in their diets.” Unfortunately, there is not yet any clinical test to determine who will react to oats, so if you decide to incorporate pure oats into your gluten-free diet, there are precautions to follow.

First, discuss the idea with a dietitian or doctor, says Melinda Dennis, a dietitian and the nutrition coordinator at the Celiac Center at Beth Israel Deaconess Medical Center in Boston. The newly diagnosed must ensure they are properly following the gluten-free diet, with all symptoms resolved and tests showing normal levels of celiac-associated antibodies. Then, the addition of oats should be gradual, with lots of water intake, and do let the doctor know of any symptoms. After three to six months, it’s wise to follow up with a gastroenterologist.

The increased fibre intake from oats can also result in temporary symptoms such as bloating and gas – which can be confused with celiac symptoms. This is another reason to incorporate oats into the diet gradually, and in concert with health-care advice.

Adding pure oats to the gluten-free diet is a nutrition booster. Dennis says the grain is a good source of fibre, protein and B vitamins, and can also help to lower cholesterol levels. Another benefit is that cooking with pure oats increases the diversity of the diet, which is always welcome to those avoiding gluten.

At the end of the day, it’s up to the individual to decide what’s right for his or her diet. Odds are, that no problems will occur from eating a small amount of pure oats, and adding them to the diet can boost nutrition, and expand options. However, if symptoms appear, or antibody levels rise, speak to your doctor. Keep in mind that there are the unlucky few who can’t even tolerate pure oats.

The subject of oats and the gluten-free diet can be confusing. Here’s what you need to know.

Anyone with celiac disease quickly learns that the protein gluten is found in wheat, barley, rye – and a whole host of foods, not just cereal-based ones, but packaged products such as malt vinegar, pre-made burgers (as a filler) and soya sauce. But one food that is at least getting a second chance on the gluten-free diet is Avena sativa – the common oat.

Oats do not inherently contain gluten protein, yet they are usually listed next to wheat, barley and rye as cereal grains to be avoided on the strict gluten-free diet. Why is this? The issue has been that oats in the field are commonly grown alongside or in rotation with the gluten-containing grains. It’s easy to get cross-contact during growing and harvesting, as well as through transportation on railway grain cars.

For these reasons, it’s accepted by experts that “regular” oats are likely to contain gluten and should be strictly avoided by those with celiac disease.

But fortunately, “regular” oats are no longer the only oats available. In recent years, it has become possible to purchase uncontaminated oats and, in the U.S., consumers can now find certified gluten-free oats and oat products. In other words, some manufacturers are now going the distance to ensure the oats remain “pure” and don’t get exposed to gluten.

There have been many scientific studies looking at these pure oats and celiac disease. Two recent studies - one focused on introducing oats to the diets of children with celiac disease and the other on the long-term effects of oat consumption in adults with celiac disease – found no harmful effects related to including moderate amounts of pure, uncontaminated oats in the gluten- free diet.

The Academy of Nutrition and Dietetics, the national dietitians’ organization, has released a position statement on oats confirming that the majority of those with celiac can eat up to 50 grams per day (about half a cup) of gluten-free dry rolled oats without any problems.

However, there is one crucial caveat: a small subset of people with celiac disease will actually react to a protein found in pure oats, known as avenin, just as if they were reacting to gluten. While it’s not known how many with celiac disease react to avenin, it’s generally accepted that it’s a small minority. According to the University of Chicago’s Celiac Disease Center, “perhaps fewer than 1 percent of celiac patients show a reaction to a large amount of oats in their diets.”

Unfortunately, there is not yet any clinical test to determine who will react to oats and who will not, so if a decision is made to incorporate oats into the gluten-free diet, there are precautions to follow. Melinda Dennis, a registered dietitian and the nutrition coordinator at the Celiac Center at Beth Israel Deaconess Medical Center in Boston, notes that before anyone adds oats to their gluten-free diet, this should be discussed with a dietitian or doctor. She also stresses only eating the proper kind of oats: “They must be pure, uncontaminated, gluten-free oats, specifically labeled as such.”

The newly diagnosed must ensure they are properly following the gluten-free diet, with all symptoms resolved and blood tests showing normal levels of antibodies associated with celiac disease. Then, the addition of oats should occur gradually, with lots of water intake, while informing the doctor of any symptoms. After three to six months, it’s important to follow up with a gastroenterologist.

The increased fiber intake from oats can also result in temporary gastrointestinal symptoms like bloating and gas – which can be confused with celiac symptoms. This is another reason why it’s important to incorporate oats into the diet gradually, and in concert with the advice of a dietitian or doctor. Adding pure oats to the gluten-free diet can be a boon to nutrition. Dennis says the grain is a good source of fiber, protein and B vitamins, and can also help to lower cholesterol levels. But beyond the nutritional benefit, being able to cook with oats increases the diversity of the diet, which is always welcome to those avoiding gluten.

At the end of the day, it’s up to the individual to decide what’s right for his or her diet. Odds are, that no problems will occur from eating a small amount of gluten-free oats, and adding them to the diet can boost nutrition and expand meal options. However, if symptoms appear, or antibody levels rise, speak to your doctor. Keep in mind that there are the unlucky few who can’t even tolerate pure oats.

]]>http://allergicliving.com/2015/01/06/need-to-know-oats-and-the-gluten-free-diet/feed/0Non-Classic Symptoms of Celiac Disease on the Risehttp://allergicliving.com/2014/12/04/non-classic-symptoms-of-celiac-disease-on-the-rise/
http://allergicliving.com/2014/12/04/non-classic-symptoms-of-celiac-disease-on-the-rise/#commentsThu, 04 Dec 2014 14:00:24 +0000http://allergicliving.com/?p=31139There are more indicators for celiac disease than just the typical “textbook” symptoms, according to a new study from Italy.

The symptoms most commonly related with celiac disease are diarrhea and weight loss, but research published in the medical journal BMC Gastroenterology confirms what gastroenterologists have been saying anecdotally: that there are now a diverse range of signs of the autoimmune disorder.

Researchers examined trends among the 770 patients diagnosed with celiac disease at St. Orsola-Malpighi University Hospital in Bologna, Italy from January 1998 to December 2012. There was a significant increase in the number of cases of celiac diagnosis during the study, and researchers found that two-thirds of the patients diagnosed exhibited signs that were considered “atypical”, such as anemia, constipation, bloating, nausea, and vomiting.

Dr. Umberto Volta, one of the study’s co-authors, said that the most striking result of the study was the indication that leading indicators of the disease are changing.

Other notable findings include:

Most patients were diagnosed between the age of 30 and 40.

Nearly 8 out of 10 patients showed some kind of symptom of celiac disease.

Celiac disease was more frequently diagnosed in women than men by a ratio of 3.5 to 1.

Over the course of the study, classic symptoms became less common, dropping from 47% during the first decade of research to 13% of the cases in the final five years of the study.

In addition to atypical gut symptoms, researchers also noted other manifestations of the disease.

“A high proportion of celiac disease patients did not show any gastrointestinal symptom, but they displayed extra-intestinal manifestations such as iron-deficiency anemia, unexplained osteoporosis, abnormalities of liver-function tests and recurrent miscarriages,” Volta told Reuters. As well, two out of 10 diagnosed patients showed no detectable signs of the disease.

Given the range of symptoms, experts advise those with persistent symptoms to consult a doctor and get tested, rather than simply trying out a gluten-free diet.

“Right now, we are testing a lot more patients than we have in the past.” Mayo Clinic celiac expert Dr. Joseph Murray said in a recent Q&A with Allergic Living. “If I see a patient with anemia, I say, ‘Be tested.’ I say the same for those who have diarrhea or for all family members of patients who have already been diagnosed.”

Nearly 1 percent of the global population is living with celiac disease – and these rates are on the rise. But Volta and his team note that this condition often goes undiagnosed, “leaving the celiac ‘iceberg’ still submerged.”

“We still miss about 80 percent of people who have the condition and, frankly, we don’t know what the impact of that is,” said Murray, author of Mayo Clinic Going Gluten-Free: The Essential Guide to Managing Celiac Disease and Other Related Conditions. “Ultimately, to find every person with celiac disease, we need to screen everyone at risk. Does that mean we need to test everyone? I’m not sure – but we do need to test a lot more people than we already are.”

‘Tis the season when gestures of hospitality are on display through festive gatherings with family, friends and even colleagues. However, for those managing food allergies or celiac disease, the generous invitations to family gatherings or business dinners quickly translate into a myriad of questions, risk assessment and sometimes, stressful challenges.

Is dinner to be held at a restaurant with safe options? Is Grandma going to set out bowls of nuts again? Is brunch a potluck? Can I bring my own food? The list goes on.

Finding that perfect balance between safety, risk and gratitude is a difficult task. If risk of a food-allergic reaction is high, then the reality of establishing boundaries and saying ‘No’ may be the solution – despite how uncomfortable that may seem.

By not saying ‘No’ to events and situations that are unsafe, we are saying ‘Yes’ to the wrong things. For example, you may need to explain to Grandma that you love her very much, but that you cannot eat her pie since that could send you to the emergency room.

Saying ‘No’ sets boundaries and provides clarity about what is – and isn’t – possible for those with food allergies or living gluten-free.

When saying ‘No’, be gracious, affirming and clear, and offer solutions or alternatives whenever appropriate. Offer to bring food – such as dessert, since it’s difficult. Avoid speaking with an angry tone and remember the reason you were invited – they want you to participate. Above all: be direct with kindness.

Like the 12 Days of Christmas, here are my 12 ways to say ‘No’ nicely:

1. It’s hard for us to miss your holiday party, but managing our toddler in such a large crowd with many allergens within his reach is not possible. We hope when he is older we’ll celebrate together again. We love you and will miss you this year. Let’s plan to have you over in the New Year.

2. Thank you for the invitation to the company holiday party, and for including my family. We will not be able to attend due to my son’s food allergy to seafood, as this year’s style of cooking and sharing dishes will place him at risk for anaphylaxis. If next year I can help with the meal planning, I’d be delighted to do so.

3. Thank you for including my children, we always enjoy spending time with you, but we find that potluck dinners are dangerous for our little ones with food allergies. May we celebrate together over allergen-safe hot cocoa next week?

4. I wish we could say “yes” to joining you this weekend. Unfortunately, the restaurant chosen is not able to accommodate my gluten-free diet. If I may suggest, I do know of a similar and wonderful restaurant that offers many delicious and gluten-free menu options.

5. I was very happy to receive your invitation. However, I am not comfortable eating from a buffet due to my food allergies. My personal policy is to bring allergen-safe food from home, so may I bring something along and enjoy the evening with you?

6. This was a very hard decision to make since you are very important to us, but we need stay home this year due the complex food allergy procedures we follow to keep our son safe. We hope you’ll come visit us this spring, we’d love to catch up on all your news!

7. Grandma, I love you dearly, but my allergies to many foods is tough. Instead of a potluck, can we prepare a safe meal that we can all enjoy together? I want to share this Christmas with you and avoid a serious allergic reaction.

His patients call him ‘Doc’. Approachable and plainspoken, gastroenterologist Joseph Murray is an expert at making sure his patients understand in lay terms exactly what celiac disease is and to treat it. Now, he and his colleagues have publishedMayo Clinic Going Gluten-Free:The Essential Guide to Managing Celiac Disease and Other Related Conditions.

It’s a compilation of the knowledge the Mayo experts have accumulated over the years, sort of “everything you always wanted to know about gluten but didn’t know to ask.’ Allergic Living spoke with Dr. Murray about what promises to become a go-to book for those living with the autoimmune disease, gluten sensitivities and allergies.

Allergic Living: What made you write ‘Going Gluten-Free’?

Several trends prompted us, including the dramatic increase in the number of celiac disease cases and the media’s interest in all things gluten. The popular press has sensationalized gluten and it has become hard to avoid discussions of it wherever you go.

Who are you trying to reach?

Here’s what it’s not: a reference book meant to educate my colleagues, and it’s not just my book. Going Gluten Free is a Mayo Clinic publication that represents a collection of wisdom, experience and science from across the spectrum, from dietitians and nutritionists, gastroenterologists, psychologists. Our editorial staff worked to make the publication accessible, authentic and readable because it represents real life with celiac disease from all perspectives: living with it, treating it and working in the field.

What do you think of doctors who counsel patients to eliminate gluten from their diet even when there is no indication it is a problem?

The physician in me can relate to the frustration that health practitioners and doctors feel when patients have symptoms that persist, so I can see why they would counsel people to try it. But as a scientist, I search for answers before making a call. I see a lot of patients who go off gluten, feel better for a few months and then their symptoms come back.

So several big issues concern me, including: Have these patients been tested for celiac disease? Maybe the problem isn’t with gluten. Maybe it’s an allergy to wheat or [an issue with] FODMAPs, small sugar-like molecules often found in fruits and some vegetables. The thing is, if they don’t get tested, then we’ll never know.

You mention in the book that some experts feel the entire population should be screened for celiac disease. What’s your position?

Right now, we are testing a lot more patients than we have in the past. If I see a patient with anemia, I say, ‘Be tested.’ I say the same for those who have diarrhea or for all members of patients who have already been diagnosed. But we still miss about 80 percent of people who have the condition and, frankly, we don’t know what the impact of that is. Ultimately, to find every person with celiac disease, we need to screen everyone at risk. Does that mean we need to test everyone? I’m not sure – but we do need to test a lot more people than we already are.

You state that the characteristics of the disease have evolved. What do you mean by that?

Back when I studied celiac disease in medical school in the 1970s and 80s, patients were supposed to have these symptoms: diarrhea, bloating and gas, a low weight, vitamin deficiencies and anemia. Now, most patients don’t present that way anymore. They present in many diverse ways ranging from anemia to abdominal pain to chronic fatigue. (Allergic Living will have a full article on the evolution of celiac disease in the Spring 2015 edition.)

What should people who have to eliminate gluten from their diet watch out for?

Be sure to eat healthy! Many gluten-free packed foods on the market are high in fat, sugar and salt, which taste good but aren’t good for you. Make sure there is enough fiber in your diet and that you’re getting enough vitamins, iron, copper and folic acid. Unlike regular products such as breakfast cereals, gluten-free substitutes aren’t so fortified. Consult a nutritionist if you have questions. Ask your doctor. Join a local celiac support group.

In the book, you say that symptoms persist in up to 30 per cent of patients after they have been gluten-free for between six months to a year. Why?

In the rare case, it could be refractory celiac disease, where the small intestine doesn’t heal despite adherence to a gluten-free diet. Or it could be from something else that in not related to celiac disease such as colitis, irritable bowel syndrome or lactose intolerance.

But in most cases, it means there is still a low level of gluten contamination going on. Recent studies have shown that products that shouldn’t contain gluten do have it. And an interesting survey last year had one-third of 200 British respondents revealing that they deliberately eat gluten from time to time.

Have you ever been surprised by a product that contains gluten?

Yes! Labeling laws have made me realize that there are products I never imagined would have contained gluten, but somehow it sneaks in. Think of hard candies that have been dusted with flour to keep them from sticking to wrappers. And even if there is no evidence of gluten on an ingredient list, it still could be present.

Oat-based products are particularly problematic. While oats themselves don’t contain gluten, they may have become contaminated by wheat or barley grown in nearby fields.